My Voyage Through Early-Onset Alzheimer's

Poof! It’s 2020

I began writing this on the last day of 2019, the last day of the decade. It’s obvious that it will be 2020 when I’m able to complete it. It doesn’t matter. The date has nothing to do with this ongoing battle. I remain truthful about the unraveling of my brain. Can’t hide the truth.

Inspiration and imagination have been hard to come by so this drawing surprised me. It’s not one of my best, but it showed that I could still be imaginative. The inspiration was a mixed media sculpture I made 40 years ago. It was a birdhouse I crafted out of wood, and covered it in green and black polka dot astroturf. The top looked like a house with it’s gabled roof flung open. On the wall near the sculpture, I glued guinea hen feathers in an arrangement that spelled the word Poof! My intention then was to illustrate the destructive role of technology, and it’s encroachment upon nature.

I started to draw the feathers and I pictured a whole page of feathers, like a trompe l’oeil painting, where the things depicted look real. I meant to cover the whole page with them. Then I stopped after I drew four feathers, and the rest of the page was empty. The feathers looked like they should frame a face. So this is a self portrait, that it’s safe to say illustrates an outlandish creature.

As a young artist, I was drawn to the Surrealist and Dada movements. Now I see that it makes sense that the Dada art movement came about because the artists were expressing their discontent with violence, war and nationalism. It developed in reaction to World War I. This drawing is irrational on purpose. There is no rationale to what is going on with me and there is no rationale to what is happening in the world.

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By now you have likely heard about the planned deadly terrorist attack on Orthodox Jews in Jersey City by a man and woman linked to the Black Hebrew Israelite movement. in which a police officer and three civilians were killed in a prolonged gunfight. The two shooters also died in the attack. You have read about the machete stabbing of five people celebrating Chanukah at a rabbi’s home in Monsey, New York. Antisemitism has reared it’s ugly head in our great nation. It is a world phenomenon. Acts of violence against Jews have happened over the last decade in Europe. Now it has crossed the Atlantic. And the crimes are being committed by fellow Americans. In the last few weeks by African Americans. This is really of deep concern.

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My nightmare

I’m a person who was diagnosed with probable Alzheimer’s, and also a child of deceased Holocaust survivors. The diagnosis came at far too young an age, 62.

I began to have paralyzing nightmares a few days ago. The other night I had a nightmare that horrified me, and I see now that it’s related to these recent acts of violence and my feelings of helplessness as I progress in this horrible disease. In the dream I was going to visit a woman I know who also has an Alzheimer’s diagnosis. I entered an apartment building and a doorman showed me the entrance to her apartment. The “apartment” was a small disheveled room, and she was sleeping on the floor on a mat. Her condition was atrocious. Her body was covered with sores, that looked yellow and blue. I looked at her and knew that I didn’t have the power to help her. I stepped out on the street and was approached by a friendly large middle aged woman who wore an elaborate coat, sort of a tapestry, with large areas of white fur. She smiled and seemed to know me, and I instantly felt I had found a kindred spirit. Then I was both outside on the street and also inside another apartment. The scene kept switching back and forth. I stood by a window and watched a little girl climb out onto a roof between the window and the adjacent building. Then I was outside and a crowd of people were gathered. There was a sense of imminent danger. I crouched by a car protecting another little girl with my body. Then I was inside the room again, looking out the window, and the first little girl was walking back and forth on the low roof between the buildings carrying a small bag. The building on the other side became a car and the little girl walked over to it and someone inside opened the car window and handed her a large gun, which looked like a black machine gun. I was outside again protecting the other little girl when the woman I met earlier, with the elaborate fur coat walked over to me smiling. Before she could say anything, gun shots rang out and I saw that she was hit. The white fur of her coat quickly saturated with red blood. She fell to the ground. There was nothing I could do to help her.

I woke and sat up. I felt paralyzed to help myself, couldn’t call out to my husband, just felt terrified and unable to self soothe. I grabbed my phone and looked up nightmares in Alzheimer’s patients. It said that some people who have terrifying nightmares where they’re being attacked or chased can be an early sign of Alzheimer’s or Parkinson’s disease. It is believed to be caused by damage in the part of the brain that controls our dreaming “safety switch”.

Somehow I did get myself off the couch and up to bed. I woke my husband and asked him to tuck me in.

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Nightmares, fear of sleep, fear of being awake… Fear that I can no longer think. Fear that I’m turning into a zombie. Fear that I can no longer comfort myself, no longer able to self soothe. Helplessness. And then the fight goes on. I’m a fighter, and I use my words to fight back. The stigma, the losses…all mount, but while I can I will hold up a mirror to myself, and I’ll hold up the mirror to the world around me.

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I hadn’t read a novel since the diagnosis, despite a full bookcase of books I haven’t read, and those I have read, I have forgotten the storyline. I’ve obsessed about this. My inability to retain. Loss of short term memory. Lost on the page.

Last week my dear friend Jeanne invited us over for dinner. Usually she comes over on Wednesdays and we play Scrabble. She said if I wanted to play Scrabble before dinner I should get there by 2:30 pm, as she needed to start prepping the food by 5pm. So my husband walked me to Jeanne’s, dropped me off and after the Scrabble game, I wandered into her dining room. On the table was a photo and article about Edgar Allen Poe and a toy raven that looked to me like something out of a taxidermist collection. Jeanne told me it was there because she’d hosted an event for the library. I was spooked. I asked her if I could go upstairs while she prepared dinner, and I climbed the stairs to the second floor. I walked into the living room where all the furniture looked so low to the ground. I felt like somehow I had grown taller, as if I had fallen down the rabbit hole in Alice in Wonderland. I looked at the photographs around the room, her son and daughter in law and their children, her late mother and father, Jeanne’s husband, Bob’s departed parents. In the tall bookcase, I spotted Anna Quindlan’s second novel, One True Thing and took it out and walked over to the couch and sat down with it, and began to read.

I met Anna Quindlan when she lived in Hoboken in the 1980’s. We rode the bus together with our then young sons, taking them to school in Manhattan. At that time I owned an art gallery in Manhattan, and would drop my son off before I headed to SoHo. Anna wrote a column for the New York Times called Public and Private (for which she won a Pulitzer prize in 1992). I knew from her column that she had lost her mother to cancer when she was nineteen. I knew she had gone to Barnard college and left school to care for her dying mom. I knew that this novel was not exactly an autobiography, but that it contained the seeds of her own family saga, as the main character was a reporter who returned home to care for her mother who was dying of cancer. I’d never read it and yet intended to. Here was my chance. I read the whole book, and to my surprise was able to retain so much of it. It took most of three nights to complete. I was hooked from the first page. The protagonist, Ellen Gulden, is in jail, accused of mercy killing her mother. She says she didn’t do it, and thinks she knows who did. Ellen had returned home to take care of her mother, Kate Gulden. The disease was already far advanced. Her father insisted Ellen quit her job and come home. Ellen had always been the special child of the family, the high achiever, and close to her father, an English professor. She saw herself as the one caught in the middle between her parents. Different from her mother, the talented homemaker, the family’s center – the one true thing. Yet as Ellen spends more and more time with her mother, she learns many surprising things about her, who she thought she knew so well. The life choices she and her mother made are reassessed and she sees her father as an absent figure, unable to be fully present for his wife in her time of need. When Ellen is accused of giving an overdose of morphine to her mother, she thinks her father did it. She witnessed him feeding her rice pudding the night before. He goes up to bed, and Ellen stays with her mother through the night, listening to and watching her breathe, until she takes one long last inhalation of breath. When her father comes downstairs in the morning and asks “How is she?”, Ellen replies, “She’s dead. I’ll go make the coffee”. When the autopsy reveals that Kate died from a morphine overdose, and Ellen is arrested and charged with killing her mother, and her father does not post bail, she is convinced that it was her father who did it. But she does not accuse him, and the case goes to trial. The jury decides not to indict her and she leaves and returns to New York City, and vows to never see her father again. Eight years later she sees him at a theater and they talk and he tells her, “I never blamed you for what you did. It was the right thing to do. it took a great deal of courage…”. She realizes he was not the one who gave Kate the morphine overdose. What Ellen realizes is that Kate herself had kept the many morphine pills she kept asking for to quell the pain. That her mother found a way to put the powder in the rice pudding that her father fed her that night. Ellen didn’t think her mother had it in her. How wrong she was about her mother and her father. She wonders how much of family life is “a vast web of misunderstandings, a tinted and touched up family portrait, an accurate representation of fact that leaves out only the essential truth”.

December 26, 1976 was the day we were married. Wayne retrieved the bouquet of roses from his car, smiling and hugging me. “Happy anniversary”. 43 years. He is still here. Resigned to this. The one taking care of me. Day after day. Guiding me when I do not know what to do next. Walking me through the conceptual blindness and physical weakening that has overtaken me. Urging me to get up when all I can do is lay there. Getting me started, when the switch that connects me to the world, won’t connect. Helping me down the stairs. Helping me to start the day. Telling me that he will be here. Telling me when he won’t. Giving me the courage to battle this when I’m alone. Taking me for walks. Driving me to see our children, who are for the most part, blissfully unaware of how difficult our lives have become, because they are shielded from it. They have their own lives. There are baby grandchildren. There are their jobs and their own bills to pay and relationships to nurture. Though I wish they were capable of being more mindful, as the time is slipping away, I am aware that the situation can’t be changed.

How sad I am for him that because of me, he is the one trapped in this caregiving. This is not a life that anyone could imagine, unless they’ve lived through it. And yet though it feels like I’m near the end, the long goodbye drags on. It won’t get better. That is the reality of Alzheimer’s. It progresses. My mobility and speech have been affected for over a year. I’m still ambulatory but my balance is poor and my strength is diminished. He hears me babble and now often doesn’t pay attention. Sometimes when he hears me he says “what?” and I realize I can’t give him and answer. I’ve been absent, chattering on in a zone I don’t understand myself. He listens to me repeat the same questions. It’s obvious that he is very lonely. I can see how wearying this is. If only I could snap out of it. If only. He understands how vulnerable and afraid I am. He holds me up when he can, though it is dragging him down too. He understands it’s the disease. He laughs when I thank him and tell him that the dinner has flavor, unable to think fast enough to say, “mmm…delicious…you’ve become a marvelous chef!”. He knows what I mean. Deciphers the cryptology that is the result of my semantic confusion . There are times still when just being together is enough. He encourages me to write, to draw, to find ways to express myself. That is how he has been throughout our many years together, always encouraging, and that hasn’t changed. He is the love of my life. Despite the things that have torn us apart, the years of misunderstanding and battles, I have known love and it is because of him.

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I can still draw and I can still write. But you my dear reader know that my days are numbered, and each word and sentence is hard won. Happy New Year. I am happy that I can still dress myself and function, to the degree that I still can. I am still able to walk, although not nearly as well as I did a year ago. I’m extremely grateful that I can still read, which I know was one of my first questions when the neurologist told me the Pet scan revealed I have probable Alzheimer’s. Many with this diagnosis lose the ability to read and write early in the disease. Their loved ones plunk them down in front of the television where they watch sitcoms and reruns.

I acquiesced when he said he had to go on an errand to pick up his car that was being refitted with a new tire. Often I panic when he leaves and protest before he goes. I didn’t. I was still sitting in the same spot when he returned. He lay curled up on the chaise I bought years ago from Macys, watching movies on the tele, while I took care of myself, showered, washed my hair, clipped and filed my nails, ate without asking him to sit near me. I then joined him in the living room and watched a movie (the new Eddie Murphy comedy Dolemite Is My Name). Content to be near him. Sad for both of us but still able to share a laugh. It is what it is.

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These are old photos of my mother with me and my older sister. We’re in St. James park in the Bronx. The year is 1958. I was four and Lillian was eleven. My guess is my mom was forty four. The photo of my father appears to be taken in Gombin (Gabin), Poland. It was 1946 and his mother, father, sister and brother, had all been murdered by the Nazis. He left Poland that year with my mother and lived in a displaced persons camp in Germany (Bergen Belsen), where my sister was born the following year. In 1951 the three of them boarded a ship for the United States.

Portrait of Caarin

Caarin is the bouyant surprise. The treasure I would have never known if she hadn’t shown up at my door last August in search of her own roots and information about her birth mother (my sister). I wish I had met her when I was was well, but at least I met her when I could still share with her. As a result of our meeting she has met her birth father, his sister, a half brother, and knows about her birth mother and her family. She has met my daughter and my son and spent time with our grandchildren, with my husband. She has taken me to museums and programs in New York. She and her husband have cooked dinners for my husband and I. She’s spoken about her adoptive mother Carol, who died three years ago, and who I believe raised her to feel loved and cherished. I am eleven years older than her. I was eleven when she was born. I am her aunt. I’ve met her children, Jasper and Charlotte. Maybe Caarin will write about all of this someday. I asked Jasper to videotape me. I told him about his grandparents, his great great grandparents in Poland and Russia. I sent him photos. He resembles Menachem Mendel Gershanovich, his great great grandfather. I’ve sent him links to my films Back to Gombinhttps://vimeo.com/124443430 and The Lilliputhttps://player.vimeo.com/video/91234297

History is always disappearing, but for some reason Caarin found me. Maybe Jasper will tell the story about how his mom found out about her birth family and in turn his own links to a past he would never have known about if Caarin had not been the fiece detective she is. Maybe he and my daughter Mimi will meet and make a film someday about this. Or not.

Portrait of Jeanne

Jeanne has been coming to our home on Wednesdays for the past two years. We must have played over a hundred games of Scrabble. I’ve joked that my epitaph should say, “Alzheimer’s Scrabble Champion”. My husband said isn’t that an oxymoron? I think she’s beat me twice in that time. She’s getting to be an extremely good Scrabble player, and I suspect my reign will be short lived. She is a vegan and a foodie, and brings delicious soups and meals prepared in her kitchen every week. This kind gesture gives my husband a break one night a week, since he is still working, and driving many hours three days a week, and taking care of me, which includes preparing all our meals, as well as just about everything else to keep a roof over our heads. Jeanne and I have talked about our families. She’s listened to me go on about my illness, my fears, and she has stood by me as a patient friend as my symptoms have progressed. She’s told me about her problems with sleep, and how she tries to maintain a sleep schedule. She has talked about her aging friends, about their trials and tribulations. A friendship that began two and half years ago, a month after I resigned from my twenty years of teaching art and art history, has grown and sustained. When I met her, I had been walking to shul for Rosh Hashanah and stopped to rest on a bench in the park. As she passed I called out to her and asked her if she wouldn’t mind walking with me. I hardly knew her then, but told her I wasn’t well, and took her arm. When we left the service that night, she walked me home, and I told her about the diagnosis. Since then she’s remained steadfast and taught me a lot about what means to be a friend.

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Julie! I have a friend in Alabama, that I text with every day, that I’ve never met in person. Her diagnosis is a mystery, maybe Lewy bodies that has progressed. We commiserate about our symptoms in texts. I’ve spoken with her once on the phone, about a year ago. Since then she’s developed some aphasia and says she writes better than she speaks. I rarely speak on the phone now either, so we hold onto our ability to communicate through texts. We send each other photographs, selfies, pics of our kids and spouses. The illness she has often exhausts her, yet she rallies. We compare our lives and have learned that two woman from such different backgrounds, such different life stories, can bond through illness and the fight to survive. We joke about our losses. I ask her if she has eaten dinner. She said she will have to ask her husband who is outside. I say, “You don’t remember if you’ve eaten?”. She said, “I don’t remember sh-t!”. We’re like a seesaw, balancing each other by remaining in touch, helping each other by understanding how things that were simple are now very hard to do, encouraging each other to keep living and enjoying the little things. She’ll send me a photo of herself eating chocolate! Our moments shared make us both aware that we’re not alone in this journey.

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So why do I feel so alone? Because so many others I considered friends have not called or written,, making me feel like I am a leper? The stigma about Alzheimer’s is when my ire is raised. When the negative emotions threaten to annihilate all the good. The former director and founder of the school in which I chaired the department for twenty years – not a word or a call. She lives seven blocks away. My high school friend. I wrote a eulogy for her mother when she died. I taught her how to make etchings and prints. I nurtured her back to sanity when her lunatic boyfriend killed himself with a gun he had hidden in their apartment, when she was living with him in Canada. I was a good friend then. She knows my diagnosis and initially stayed in touch. Then nothing, not a text in well over a year. I read her effusive Facebook posts. I know that her only child, her son got married. I think if the situation were reversed I would have stayed in touch with her. The cousin who I housed when she had no where to live. Laughed with. Nurtured. For years. The artist girlfriend who used to live nearby who I’ve known since our sons were little and played together. Gone. I click like on her Facebook page in response to the ethereal images of her paintings. What am I going to say? Wish you would visit? Wish you would write to me? It’s when I focus on the rejection that the sadness and loneliness and the pathetic “poor me” of this disease make me feel so much more defeated.

Josie Rubio an editor and writer wrote a long running blog during her battle with cancer called A Pain In the Neck. She died at the age of 42 last month. I read her whole blog and found her wry humor and honesty incredibly relieving. She said things like, “dying as it turns out, is incredibly boring”. She said it so much better than I can in her post called Deathbed Tourists http://apainintheneck.com/2019/10/22/deathbed-tourists/ she wrote about friends that abandoned her – Why am I so angry? Why am I wasting my precious time worrying over these people? Why do I turn my thoughts over the people I feel hurt by: friends who have turned, people who have said I’m like family then ditched me, people who I’ve felt abandoned by? I need to let it go. But as Kim Gordon of Sonic Youth said of her ex, Thurston Moore, “You can’t really forgive someone if they don’t say they’re sorry.” According to Gordon, the Dalai Lama said you don’t need to forgive if you have empathy for the person. I don’t understand these people though. Yet I’ve thrown so much shade, I’m sitting in the cold. I want to be in the sunshine. Is that a selfish reason to want to forgive? Is it any worse than being like them, wanting to appear kind in the eyes of others by pretending to feel something other than contempt for me? I call them Deathbed Tourists. My illness is a backdrop. It’s so sad that I’m dying, but it’s definitely my fault that our relationships ended. Isn’t it?

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Of course, I am angry, furious that I got a disease that is worse than cancer because it has impinged so starkly on my ability to get out of my own way and simply live my life.

What I fight is that this disease is seen as a form of mental illness, which it is not. It is a physical illness – it’s neurodegenerative, and affects the brain and body. It is misconstrued as a mental illness, wherein fact it is a medical illness that disrupts the way the brain works and so affects the body and the mind. It plays havoc on the emotions because emotions are hard wired in the brain. We use hearts as emojis but the physical heart does not rule our emotions. It’s all in the brain. Alz is a terminal illness and in many cases the younger the person is when diagnosed, the faster it progresses and the pathology can be extremely aggressive. But I was never a quitter, even though this is not a battle I can win. So far I have chosen to fight this with all I have left, and take what this tyrannical disease is throwing at me.

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That’s not to say I haven’t cried. Today I broke down in Pamela’s office. Couldn’t hold it together and it felt good to just cry. Because I am sad and angry doesn’t mean my spirit is weak. It was a rough day. The yoga teacher quit. It was helping with my strength and mobility. I will need to find a way to keep moving, to keep walking, to find my inner and outer balance in different ways.

Bill Lyons, the great sports writer, died of Alzheimer’s and Parkinson’s disease wrote a column about being held captive by “Al”. Four years after his diagnosis he revealed it was taking away his ability to construct paragraphs and sentences. “But I am trying”, he wrote.

I don’t want pity, but I do want understanding. I’m weak and strong. I’m scared and brave. I’m damned angry that I got this disease and I fight it and I cry.

I didn’t think I could write this post after not being able to write for a month. I am having a hard time finishing it, can’t find the words. But I am trying.

Statue of Christopher Columbus (Italian explorer who opened the New World for conquest and European colonization)

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9 thoughts on “Poof! It’s 2020”

Minna – I’m so glad you were able to share all of this – with all of your remarkable candor and eloquence. It’s hard to hear about the decline and the loneliness, but I’m happy to also hear about your friendships and scrabble victories. Speaking of which – my children were amazed by your ability to speed through the NYT crossword puzzle when you visited last. I’m glad that you still have the will to fight. I am so very fortunate to have you in my life. xoxo

I do not reply often, but I DO read! With great admiration for your attitude, your interests, your strength, and especially your writing! I lost both of my parents to alsheimers, and my younger sister may be next… Today’s entry contained what sound like very happy events, and it makes me happy to know that there are some! I hope that they continue, and that you enjoy them! Bruce Miller

Hello Bruce, Oh no you think your younger sister may have it? I pray not. I’m assuming your parents were older. Still very hard. Were you involved in their care? I realize that commenting on my blog is a kind of cheerleading. It’s a rallying cry to fight for life.
-Minna

Thank you, Minna for another wonderful post. You speak and write so eloquently. You express yourself very well. I love and have read many of Anna Quindlen’s books, including One True Thing. Life is hard. These times are so difficult. All that is true but there is still much beauty. The hard work is finding it. I’m glad I’ve found you and the beauty of your writing and art.

I read quite a few blogs written by women about their lives. Yours is by far the best. I love your style and your eloquence. Have you ever thought about combining your blogs into a book? You are able to give an insight into what it is like to suffer from Alzheimer’s that almost no others can do. I am in awe of your ability to write about what you have done during your life and what you are doing now. Please keep on writing as long as you can.

Karen, That’s a huge compliment and it’s because of this that i push to continue with this blog. I admit it’s getting much harder. I’ve shared many intimate details about my life over the course of the two and half years since I began the blog. It would be great if a publisher would take notice and edit the whole blog into a book. There was a lovely man, Joseph Pratt, who tried, but no luck. It would take someone who has strong publishing contacts and the belief in the importance of sharing my story to see this to fruition. Feel free to share my work.
Thank you,
Minna